The first time, I learned that care.data had shared a million records with The Society of Actuaries. Actuaries are people who work for insurers - not the first people I would want to share my medical records with. The SoA apparently paid just £3,000 for this dataset.
A couple of years later, they changed the data-sharing plan, and claimed that my original opt-out didn't apply to the new plan; so I opted out again. This time, I had to opt-out of both my GP records and my hospital records being shared, with two different agencies, using two different forms.
This time it's again two different agencies. My GP confirmed that my old opt-out was no longer valid, and I needed to opt-out again. Really - GP surgeries are kinda busy just now, and could do without yet another snowstorm of paperwork.
So Simon Stevens, the plonker behind all this nonsense, has resigned from NHS England (but he hasn't actually gone).
NHS Digital owns the most-valuable medical records database in the world - it covers substantially the entire population (80M). Iceland also has a whole-population dataset - but their population is only about 350,000.
This data should NOT be "shared" - it should be exploited by the NHS itself, to create new treatments and diagnostic methods. These treatments and techniques could then be sold, to help reduce the cost of the NHS to taxpayers. The NHS shouldn't be sharing this data with commercial companies - the NHS has a long record of failure in managing contracts with third-parties.
For clarity, I'm strongly in favour of exploiting this data. What I'm opposed to is senior NHS managers with a background in US private healthcare, sneaking through plans that haven't been properly scrutinised. Without proper scrutiny, the plans are almost certainly going to be defective.
Stop, already.